Market Overview

Dedicated Online Platform Launches to Unite, Support and Educate Duchenne Community


Collaborative site offers a trustworthy, moderated online space where
Duchenne families, caregivers, NGOs and pharmaceutical companies can
connect and share knowledge

The Duchenne muscular dystrophy (DMD) community now has a dedicated
online platform where they can connect and share knowledge – DuchenneXchange
( Launched today, DuchenneXchange is the one-stop
shop for the Duchenne community that was the result of rareLife
, a rare disease technology developer and the creators of
the online platform, collaborating with CureDuchenne,
a leading national nonprofit, as two of the foundational sponsors to
make DuchenneXchange possible.

Built by the Duchenne community for the Duchenne community, the
DuchenneXchange is a collaborative, inclusive environment where the
entire Duchenne community can share comprehensive, safe, credible
resources and information as well as get the support they need from
diagnosis to treatment to clinical trials. All Duchenne stakeholders,
including patients, families, organizations, scientists, advocates,
health care professionals, and pharmaceutical companies, are invited to

Duchenne is the most common yet fatal form of muscular dystrophy that
affects boys. There are approximately 15,000 boys and young men living
with Duchenne in the U.S. and 300,000 worldwide. Typically, boys are
diagnosed by the age of five, in a wheelchair by age 12 and most do not
live past their late-20s. Care for these boys and young men is
comprehensive and involves a health care team of up to 20 specialists.

"Navigating care and clinical trials can be extremely overwhelming for
individuals and families living with Duchenne muscular dystrophy," said
Debra Miller, founder and CEO, CureDuchenne. "That's why it is crucial
to connect families with each other and the medical and research
communities early and throughout their journey, so they can get the
emotional and medical support they need."

"DuchenneXchange offers a unique opportunity to truly transform the care
of patients and caregivers living with Duchenne today and in the
future," said Dan Donovan, co-founder and CEO of rareLife solutions.
"Unlike other social media channels, members of the DuchenneXchange will
never see advertising. Instead, this platform serves up trustworthy
Duchenne knowledge in a variety of formats to help members along their

Duchenne community experts, advisors, and community managers oversee the
platform content and discussions to ensure a trustworthy, positive
environment. In the SMART Social Wall, as key words pop up in
conversations, videos, news articles, research, patient advocates, care
providers, community activities and clinical trials are posted directly
into the conversation – at the point when people are talking about it
and receptive to learn more.

Highlights of the DuchenneXchange user interface include:

  • rareCourage: SMART social wall that connects members to each
    other and employs Predictive Information Sharing to identify and share
    curated resources related to the wall conversations.
  • rareCurate: hand-selected disease-specific resource library
    including Evidence and Education, People & Places, Social & Media,
    Videos & Visuals, and News & Meetings
  • rareClinical: clinical education center that also matches
    patients to trials and trials to patients.
  • rareTeams: private teams to share private conversations.
  • myBinder: personal folder of saved information to share with
    doctors, friends and family.
  • Polls & Surveys: for immediate real-world patient/caregiver
    experiential data to better understand the Duchenne journey.

"Since diagnosis, I struggled to find comprehensive, accurate
information that is Duchenne-specific," said Tammy Henegar, founder of
Braeden's Bridge. "There is also a lot of confusing information floating
around out there about Duchenne. The DuchenneXchange seeks to solve that
problem and we are excited about this incredible opportunity to engage
our amazing Duchenne community and guide them in a positive way."

"The patient perspective stands at the center of everything we do at
Sarepta," stated Doug Ingram, Sarepta Therapeutics president and chief
executive officer. "Enhancing the exchange of information between all
those living with and those fighting to improve the lives of those
living with Duchenne will benefit families now and improve all of our
chances of rapidly developing and providing access to life-improving
therapy and care in the future."

"It is wonderful to partner with patient advocacy organizations on this
breakthrough opportunity to unite the community," said Mary Frances
Harmon, senior vice president, Corporate Relations, PTC Therapeutics.
"We are thrilled to be part of the DuchenneXchange and look forward to
watching it flourish."

"We have experience with this type of platform for other rare disease
communities and recognize the need for the Duchenne community to come
together to learn from each other as experts and to support each other
as members of a shared journey," said Katherine Beaverson, MS, senior
director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer
Inc. "We are proud to play a role in supporting this important program
and we hope that it meets the education and support needs of the

Duchenne community members are invited to learn about the benefits of
the DuchenneXchange in an upcoming webinar:

Date/Time: Tue, Aug 7, 2018, 1:00 PM (PDT) / 4:00 PM (EDT)
Dial-In Number(s):
U.S. & Canada: 866.740.1260
Code: 8722593
Registration Link:

About CureDuchenne

is the leading nonprofit dedicated to extending and improving the lives
of 300,000 boys worldwide who have Duchenne muscular dystrophy, a
degenerative disease with no known cure. CureDuchenne uses an
entrepreneurial venture philanthropy model to fund impactful research
and accelerate human clinical trials. Through its CureDuchenne Cares
program, it provides confidence to families seeking valuable resources,
trains physical therapists and other health professionals on new
standards of care and provides hope, support and empowerment to the
Duchenne community. For more information, please visit,
and follow us on Facebook,
and YouTube.

rareLife solutions

 is the health tech, design and research team behind
oneSCDvoice, oneFAPvoice, and additional customized rare disease
platforms. rareLife solutions, focused solely on rare diseases, offers
integrated strategic and tactical community engagement plans, medical
communications and reimagined rare publication planning services in
addition to our collaborative platform as a service (PaaS) solutions for
advocacy groups, pharmaceutical and device companies, medical and
research centers, contract research organizations and professional
healthcare associations. To learn more, please visit us at and,
follow us on Twitter at @rareLifeTalks and @onevoiceworld, join us on
LinkedIn, and like us on Facebook at and

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